Thursday, May 27, 2004


I have started using the Metrics link on the right side of the page to track my major events or, if you will, progression (or lack thereof). So If you ever want a quick peek at my status, go there.

Tuesday, May 18, 2004

Blog Death

There is this thing called Sitemeter which many people who write blogs or otherwise run websites use, to get a hit count of how many people are coming to the site. It even tells you what time zone and domain visitors are connecting from.

No, it does not tell you the exact IP address. No, there is no way to find out who specifically connected. So relax.

But I can make guesses. I have a pal in Eastern Europe and in England. I have a pal on the East Coast. I have a pal in Hawaii. I have a pal in New Zealand. I infer when these people connect, and they have been my most consistent readers.

Sitemeter even has a feature that shows you the referring URL, that is, the page the person came from to get to yours. For example, if someone came to your site because it was listed on another site, that referring URL shows up. Several times a week I will see referring URLs from a search engine, because someone misspelled a word in their search terms, and I also happened to misspell it in the same way in my blog. Or from time to time people will be searching for information about multiple sclerosis. Or muscles. One person was apparently searching for some material they could crib for a student paper they had to write about the book Tuesdays with Morrie, which I mentioned but have not read. And probably won’t. Oddly, few people reach me because they are searching for info about ALS. That’s probably because ALS is so rare, and kills so quickly. Or maybe it’s because I spell everything wrong.

And by the way, you can stop panicking, because the referring URL does not tell me what page you were on before you selected this blog from your favorites menu. So, I won’t know that you came straight here after looking at porn. (Though I am, really, honored.)

Anyway, since Friday the only hits I have gotten were hits from people searching, or my own hits (generated while writing the blog). This caps a long, steady decline in blog visits that began just about the time I hit my one-month diagnosis anniversary.

I can totally understand that, and I am not trying to make you folks feel bad. You have busy lives. Kids. Jobs. Affairs. I am honored that so many of you have read so much of my blog. Really. The glass is full.

I have tried to write every single day, and have managed to come pretty close to doing so. Writing every day, even when you don’t have much to say, is a crowd-pleaser. Or at least, it pleases me when I follow other peoples’ blogs.

My philosophy of writing every day is derived from the online hobby around the game Diplomacy, where the smart player’s credo is Write Every Day, and Respond To Every Email. It’s a fun hobby and now that I am ‘dying’ I may just get back into it.

So many other fun things to do also, though.

While writing the blog, I have picked up a few new friends, and a few loyal readers who I’ve never met. I’d like to give another big shout out to Bushra, and Anna-who-I-don’t-know, and whoever that person is in the UK national health service, and lastly to Bolt Beranek and Newman Inc. By the way, these people at BBN sound really hot. They’re the kind of people I would want to be. I wish I had that kind of technical skill and impact. But of course, I would also want to remain as poetic and sexy as I am. You can’t have it all. So I’ll just stay sexy.

I guess that I appreciate the unsolicited fans best. They are the only ones left, though.

Once again to my dear friends in the known world ... I am not trying to make you feel bad, or guilty, for not reading my blog. And I know that a lot of you check in from time to time, once a week or every few weeks. That’s all good. You have no duty to read this blog, and I am grateful that you ever did.

Which gets me to my motivation. Why did I start this blog? My motivation was to gather my own thoughts, and to connect to my friends. At this point, I feel well-connected to my friends. And I have certainly gathered my thoughts. I also love to write, and the blog provided ample reason to resume doing that. But now I have some other writing that I would like to do.

So the blog has fulfilled its mission, for now.

It has also taught me something about my own writing and personality. There are some people who admire me devotedly, in an almost scary, fan-like way. These are few in number. Most other people find me unappealing, in a cold, arrogant, nerdish, distant, unsympathetic dork kind of way. Thus we come to the Grand Unified Theory of my Personality and Writing. It goes like this... See, when I was in college, I had a column in the newspaper, much like this blog, in which I could write about anything I wanted. I poured my creativity into it and tried to make it funny and compelling. It was. People in the newsroom loved it, and various friends and acquaintances would stop me in streets and walkways and tell me how much they’d like this one or that one.

But I got almost no mail. Meanwhile, my funny and equally gifted fellow columnist was getting bags and bags of mail. OK, two or three letters a day. (This was all before the age of email by the way). I began to wonder why she got all the mail and I got almost none. I worked out a theory over the years that it all came down to my personality. My writing reflects my personality. And one thing I am, as a person, is just very darned confident and sure of myself. I have it all figured out. Don’t get me wrong, I can be vulnerable and confused ... but even then I know that I am vulnerable and confused, and I usually recognize it and go with the flow. When I am off-center, I make a point to go easy on myself that day. “Do not fight the Chi.”

Anyway, what this all amounts to is a guy who doesn’t seem to need anybody. No rescue required.

Even when he’s got a fatal, incurable disease, it all seems good to him. “Workin’ on the house today,” he crows, “Good to be alive!”

Most human bonding is about comforting others and being comforted. I have a strong motivation to help and comfort other people. But even they, and certainly the average person blogging by, sense that there is not much I need in return.

So if you don’t seem to need anything from them, most people don’t bond with you. Hence the reaction my my column and my blog.

Life can throw a lot of confusion and pain at a person. Two things:

One, I have been lucky to be born in such fortunate circumstances. (No, I am not rich. But in all other respects my life has been charmed). Even getting ALS is lucky, if you are in the market for a fatal, incurable disease. No dementia! No chemo! Not much pain! Oh thank you, thank you!

Two, I guess I suffered enough as a kid, and was smart enough, and poetic enough, and introspective enough, and read so many books, that I gradually came to a state of, let’s not call it enlightenment, but functional consciousness and quotidian spirituality. I became able to appreciate what life has to offer and endure what it inflicts. Even the diagnosis of ALS did not change my philosophy. Life is precious. It has limits.

I may continue to use the metrics feature of this blog to track my stats, because I find it convenient. I may even blog from time to time, or resume blogging regularly. But for right now, the lights are out...


Sunday, May 16, 2004

Abu Ghraib

I was tempted to ask you this via your comments section, but I decided it wouldn't be appropriate, and might be interpreted by some people as being a hostile question. Of course it isn't. Basically, you talk a lot on your blog about the American soldiers, but haven't mentioned the torture issue yet. How come?

It's not taken as a hostile question, and thanks for engaging me. Here's the answer, if I have one: I didn't know that I talked 'a lot' about American soldiers. But I have, several times. I recently posted about how I really, really want to see the current administration turned out in November, and I was thinking in part about the torture when I posted that. I wasn't trying to get people to infer anything, but I guess I assumed they would think I was reacting in part to Abu Ghraib. Seymour Hersh (a fine American) has done the reporting which indicates that Rumsfeld approved this kind of treatment (read, torture) for selected 'high-value' subjects during the start of the Afghan campaign, but that they let it spread and spread until US national guard troops were torturing average Iraqis who were collected in these ill-informed sweeps that (as the Red Cross noted), collected 90% innocent people. And now the Pentagon denies it. But with a program that's this secret (a) you wouldn't know and (b) you'd have to deny it if you did know.

I guess I see my blog as a way for me to ramble and brag and vent, but not a place where I have responsibility to deal with the issues of the day.

I didn't mean to leave anything out.

Just in case you are wondering where I come down on Iraq (and remember, I do have a son who in 14 years will be eligible for the draft which will be coming soon to deal with the endless parade of wars on the horizon), it goes like this: The idea of the nations of the world getting together to liberate a people from a murderous dictator is a good one, however, the Bush administration did its best to destroy the links that bind the international community, and unilaterally invaded Iraq with a childish, Hollywood-style view of how events would unfold. Those who opposed the war did so on grounds I often found perverse and cynical, and those who promoted the war did so on grounds that were usually completely false, deceitful, and cynical. The invasion of Iraq at a time when there was a real war to fight (the one against terrorism) made the Iraq invasion a poor choice and a distraction which made the world more vulnerable to terrorism. And let me add that the 'war' against terrorism will be a failure if it is thought of only in military terms. Peace and benevolence, communication, and the rise of an effective world structure for caring and the relief of suffering will be the effective tool against terror. But for now, the presence of all that oil once again made the motives of the Iraq war seem suspect. The conduct of the occupation was amateurish, unsophisticated, and hateful. We played directly into the hands of the resistance, fueling local anger with our stupid house searches and our focus on oil rather than restoring services such as electricity. Meanwhile the true terrorists such as OBL really didn't need to commit any resources to Iraq, since from their perspective, the Iraqis were handling things quite well on their own, and things were going swimmingly.

Rumsfeld's policy of torture spread like wildfire in Iraq, and the photos came out, and now what little credibility among Arabs the US had is for all functional purposes completely lost. Rumsfeld is more than a criminal, he is an incompetent. And Bush has betrayed his country and the values it stands for.

But meanwhile I have affection for the American troops in Afghanistan and Iraq, and I have (only twice now) sent them magazines I had lying around, via I can't explain it, but having been a young American once myself, I feel bonded to them, and think I know that they would appreciate the gesture. Also, having hung out with young American guys, I know how stupid and mean a group of guys can be. Like a pack of dogs. But I am picturing a group of kind, cool guys when I send my magazine, because we all know that young people can be supremely good and caring.

I have also located an organization that supports Iraqi schools, and emailed them to see if I can help.

And shifting gears here a bit, I'll toss in that, while there is much to criticize about the US, I have rarely seen it done well, particularly from Europeans. I am not saying that you can't understand us if you are not one of us, since the Americans I know who criticize America rarely do so in a way that would lead to anything constructive. I'm just saying that we live in a sick and troubled world so wracked by hateful bickering and suffering that we should govern our hearts with wise thoughts. And no, I am not The Example. I do not hold myself up as the Correct Model. I am a fallible navel-gazer who lives his life in search of day-to-day self-gratification.

History is an ocean, lashed by ugly storms and contending currents. I am a cork, leaning with feeble force toward the sunny shore. My tax dollars go to support evil oligarchs bent on destroying the world. My thoughts and words hint weakly towards the better world. We, in our millions spread across this globe, will instantiate that better world some day, despite the best efforts of the oligarchs, not through revolution and hate, but through mere survival, calm breathing, good works, smiles, and kissing the feet of babies. And getting out there and kicking butt on the Republicans at the ballot box in November.

Saturday, May 15, 2004

Pizza surface-area-to-price ratio

There has been some dispute between ourselves and the toddlers (our daughter and her friend) regarding who gets to turn the knobs on the gas stove. I wanted some way to turn off the gas supply to the stove when not in use, so that if the squibs get at it, there will be no release of airborne combustibles and malodorous mercaptins. The shutoff valve is behind the stove and down near the floor, and a neighbor's son suggested running a rod down there with an 'L' bend at the end. Also, one at the top. I set it up yesterday and it works perfectly. The attachment mode was zip ties plus copper wire.

I really like the sense of progress that comes from getting certain things done. Like this.

Last night my wife and I were planning to order pizza, and I developed the Pizza Surface-Area-To-Price Ratio. We wanted three toppings on a Very Large Pizza. The 18-inch pizza was $18.49. However, I noticed a coupon for two 12-inch pizzas with up to three toppings, for a total of $15. I have many advanced mathematicians as friends in the Anglo-Polish community, so it is with some hesitation that I now embark on my proof, but I venture that:

18-inch pizza surface area = 56.52, at $18.49 PSATP Ratio = 3.055
14-inch pizza surface area = 43.96, at $14 PSATP Ratio = 4.88
2 12-inch pizzas surface area = 75.36, at $15 PSATP Ratio = 5.02

Clearly, the PSATP Ratio favors the 2 12-inch pizza coupon heavily. However, as the wait time for delivery as announced by the pizza purveyors was 90 minutes, we ate the store-bought frozen pizza at home. It was delicious.

Friday, May 14, 2004

Erg back

For a while after the virus attack, I had low energy, particularly in the afternoon. But I am pleased to report that in the past two days I have had my usual energy. The day before yesterday I cleaned up all the leaves in front of our house, and yesterday I busted up drywall rubble and scooped it into buckets.

My weight is steady, but my wife has been bugging me to get more protein powder, so yesterday I did.

My inhaled volume is still 5100 mL, which is good. The inhaler thingy they gave me does not go any higher than 5100, but that's pretty near the top of my capacity.

There is a site, (yes, .us is a domain), where you can go to send letters and supplies to our soldiers overseas. It is privately run, not a government thing. The government stopped doing that a while back. So far I have sent some magazines. They tend to want baby wipes.

Thursday, May 13, 2004

Full metal jacket

After a couple of days of truly fine sleep, the baby has not been sleeping well the past few nights, and is basically torturing my wife.

Yesterday we went to a therapist who deals with families facing fatal illnesses. She was good, and I respect her professionalism (particularly when I said I was not interested in coming back for more sessions). Her husband died of ALS. She did not try to push an opinion on me but her opinion is that ALS is just a train ride that you can’t do anything about.

I respect her departed husband, and I shed tears for him, but I reject the notion that I must ride the train.

There's this scene in the movie Full Metal Jacket, which in turn is based on some prose in the truly excellent book Dispatches, by Michael Herr (a classic, that you must read, quite apart from the fact that in recent years the author has said that a lot of the incidents in the book were fictional) ... and in the scene the American soldiers are standing around one of their dead comrades. It’s meant to be surreal, not documentary, and they all call him the most foul, demeaning names. They are calling him a loser and a chump, separating themselves from him, insulating, protecting.

So, while I respect the therapist’s husband, part of me stands on the edge of the shell hole looking down at his corpse and calls him foul names. Not because I think he is a chump, but because I curse in the most vile and adolescent language the notion that I must obligingly meet his same fate.

After all, isn’t it what all polite people with ALS do? Yeah, right. You can bite my amyotrophy.

(Happy four-month diagnosis anniversary. Not today, baby!)

Tuesday, May 11, 2004


"What we need to do," drawled Tiberius as he cast his wiggling eyebrow my way, "is start a club."

"Okay," said Thrill. "I'll join."

Tiberius continued: "Everybody puts in $100 and submits three names. Then, the first guy who gets a fatal illness collects the pot..."

My arms shot up in the air.

"...and starts drawing names from the hat and killing those people."

And you thought three guys would wind up talking about your milkshake.
Dead things and live things

I remember one or two incidents when I was a very small boy, and we were typically on vacation, and I encountered something dead, a small animal. Naturally I was enthusiastic and delighted. I wanted to check on the dead thing every day. What would happen, though, is that the next time we went past the spot (and I naturally checked for the dead thing), the dead thing would be gone. 'Hey?!' I was puzzled. This happened more than once. I remember one time when it seemed to me that my father must have removed the dead thing. I asked him if he had, and he denied it.

Looking back, I understand the impulse. You don't want your kid getting sick, and you don't like the hassle of continually trying to divert them away from this dead thing that they find so fascinating.

So when we were in Hawaii and my son encountered a dead, dehydrated leathery corpse of a frog expired atop a storm drain gate, my impulse was to quietly get rid of it when my son was not looking. But then I remembered the experience I'd had, with the dead things that had vanished. It's not as though one course or the other is right or wrong, but I decided not to dispose of the frog. And so, every single time we walked down the driveway, my son pointed out the mummy frog. Neither right nor wrong, but his memory will be different.

As for live things, at a certain part of the year when we were kids, my mom would notice butterflies in the air. We would inspect the weeds by the roadside for caterpillars, then pull one of the weeds containing caterpillars and put it inside a box with a plastic-wrap window and some air holes in the back. The caterpillars would eat the weed, make crysalids, and turn into monarch butterflies, which we would release on the day that they hatched.

Things have changed. Now the box is a special mesh bag, and the caterpillars come in the mail, in sealed plastic containers with a gummy food paste at the bottom. After the larvae make crysalids on the lids of the plastic jars, your mommy tapes the lids to the top of the mesh bag. They're Painted Lady butterflies, not monarchs. Then they hatch, and the kids let them go. Actually, we haven't yet let them go, since we are waiting for one or two more to hatch.

I have seen an imperial butterfly fluttering around our back yard. But you know, I don't even know if this is the right temperature or season for the painted ladies. I assume it is, since Spring reigns outdoors right now. But I am not sure, since the larvae came in the mail, and we could, conceivably, be releasing the butterflies in Alaska in January. That whole question is resolved when you recruit the caterpillars from weeds growing alongside the road.

Monday, May 10, 2004


I jogged the half mile to the gym with my wife, and she took off for a longer run while I went inside and lifted the smallest weights I could, typically the 30- or 10-pound settings. I do not want a repeat of the last time I went to the gym. After that, my daughter woke us up all night long and it messed me up badly the next day.

We had a small earthquake here. No big deal.


Sunday, May 09, 2004

Mothers Day

We cheered my wife in her first competitive race since 1995, a 5K. It was good for all of us. At first when I saw all these healthy, fit people in their 20s, 30s and 40s prancing around, and I momentarily felt sad that I was being gradually removed from their number. Rather than start sobbing, I decided to hate them, temporarily, as a tactical maneuver. It worked. Then I got over it and we had a good time.

The whole physical exertion thing is a tough question for me, because I don't want to exert myself into a muscle injury. For example that's why I haven't been using the Grip Builder recently, because my mentality is that I should set a new record every time. I need to back away from that. Maybe pick a modest number and do that number and no higher every other day. On the other hand, a race would be a nice affirmative gesture. I believe that if I registered for a local 5K or something, I could run it slowly, at my pace, without getting all macho and hurting myself. I hope.

Saturday, May 08, 2004

Return of the King

The young gentleman drug dealer will be returning from his extended absence next week. Fortunately we held a well-attended neighborhood meeting last night. The mom told myself and my neighbor today that she will have a rule for him of no daytime viistors until she gets home from work, and that we can call the police if people do show up. I suspect that they will show up and he will let them in. I'll call the police just to let them know. I also got the mom's work phone number so that I can let her know.

Friday, May 07, 2004

Crampy and wobbly

I have two small calf cramps today, and I seem a bit more wobbly when walking. You might not notice anything if you saw me. I continue to hope that this is just the temporary after effect of the virus I had.

As for the events in Iraq and in the US media, and in the capitol, I can only hope we will soon find out at what point the pyramid of mutually-reinforcing lies and winking and nodding finally reaches a tipping point of unsupportability, and all those hustlers and con men on the Right find themselves standing exposed, and they break and run for the safety of the sewers.

Yeah, right. Don't count on it.

Thursday, May 06, 2004

The last stroller walk?

A while back, after I had been diagnosed with ALS, I was up in my kids' room, rocking the baby girl to sleep. It occurred to me that this might be the last time I did rock her to sleep, in the sense of giving night-night to her as a baby. That made me sad. Not because I was fearful of dying soon, but because she was soon not going to be a baby anymore. As far as I can recall, that was the last time. Once in Hawaii I rocked her to sleep for her afternoon nap. But my wife has done all the bedtime and night work with our girl, with very few exceptions. So, yes, I love rocking my babies to sleep, and yes, I'm sad to say I might not get to anymore.

Some of the ALS literature I read said something about how people with ALS often set goals for what is important to them, like continuing to be able to pick up their kids. This is a strange one because, just like rocking them to sleep, they grow so fast that sooner or later you can't pick them up.

And so today came the sadness of the possibly Last Stroller Walk. Our toddler girl is such a good walker that when we take her out, she walks alongside us. It's been this way for weeks and weeks. But today a friend dropped off her old stroller to replace the one we had, whose wheel fell off irreplacibly. Our daughter was enamored of the new stroller and implored us in her quiet way to take her for a stroller walk. I thought that she would let me push her three yards and then demand to get out and walk. However, whenever I asked her if we should go back home, she shook her head. When I asked her if I should keep pushing her, she would make her sound for "yes," which is "huh!" So I pushed her around two blocks, until my legs got tired, and I wondered in the ALS would undercut me to the point that this would be the Last Stroller Walk. But then I realized what would really most likely make it the last stroller walk: My big girl likes to walk on her own.

She's a miracle. My son is too. He and I went downtown and had lunch today. When we hang out together in an unstructured way (no deadlines) he becomes what I think of as the Real Boy -- calm, fair, fun seeker, good listener. It's only at home doing the same old, boring daily obligatories that he gets so cranky. Last night was just such a crank-storm. But suddenly I said: "Let's make a hat out of that shoe box!" The idea appealed to him and he was a gentleman the whole time.

But I still miss rocking him to sleep when he was a baby.

My son apparently has been keeping his promises with regard to no 'trapping' Patrick. And he's improved on the classroom disruption front as well, but I am going to ask him to come up with some promises regarding that. I asked the teacher about his behavior in full view of my son, with no attempt to conceal it. My thinking is that he should know that we talk to each other and that we both expect the same thing.

But I also learned that they have not been expecting him to nap at school, despite our frequent insistence. To them he seems like a big kid who doesn't need one. It's easier for them to let him join the incentive of the 'friends club' -- the older kids who don't nap. But for us, when he comes home on those days after he doesn't nap, he's Caligula in the evening. I insisted again on the nap.

A couple of young men trespassed onto my neighbor's property (this is the one that has had the break-ins). I called the cops and they searched the area but I didn't see them catch anybody. I was sure they would have. Maybe they caught them fence-jumping on the other side. They had a back-up unit there.

What else can I tell ya. I put automated reminders into my computer calendar to tell me when to go on and off creatine and ginseng (3 weeks on, 1 week off, for both). And I put in daily reminders for taking pills. I am not on the computer all the time, but I often check in, that that should help. I rarely forget, but sometimes I remember the evening pills only while climbing into bed.

After my recent illness (the first once since the ALS diagnosis), I have the subjective impression that my muscles are more grabby (that's a bad thing, sort of a pre-cramping senssation). Hopefully I'm still recovering from the virus or whatever, and this is not permanent. I also have been observing my left hand since around the time of Hawaii. It seems a tad less dextrous. But I am pleased to say that these impressions are just shades on shades. Too soon to tell.

Wednesday, May 05, 2004

Yard work

I did some yard work today. Health seems back to normal. Perfect weather as usual. Butterflies, not mosquitos. Was offered an avocado and almost barfed. Saw a painting of a palm tree, the ocean, and an island on a musical instrument. Same reaction. No offense intended. I am just a strange bird.

But not as strange as Rummy, and his avoidance of what he called the "'T' word." What a jerk. I have added a sig line to my emails endorsing John Kerry. Gave $50 to (probably I already mentioned that.) Another cool organization is the Ad Council.

A pharma stock I invested a small amount of money is last year went up and up and is now the target of a hostile takeover. It has nearly doubled in price. Remember, I said "a small amount."


Tuesday, May 04, 2004


I finished importing all the analog video into the computer. I burned DVDs of all the analog stuff so far, except for one. And I will be able to make a 'greatest hits' DVD from the raw material. Editing that will take a long time.

We live in a neighborhood with a lot of retired people (and a lot of young families), and from time to time I find myself telling a neighbor I have ALS. When it is an older person of a certain generation, I call it 'Lou Gehrig's disease.' That seems more familiar to them.

And I can't speak for other people, just for me, but the reaction I least like from an acquaintance is a sympathetic 'Oh, I am SO sorry!' I know they really mean it, and I am not saying they are wrong to feel that and say it. Plus, people who I hug when I see them have said this and should feel free to say this. I know them well enough that it means a lot to me. But the reaction I prefer the most (and this is just me speaking), is exemplified by the one my next door neighbor gave: "OH S**T!" I also like, "Dude, that sucks" or "Sheesh!" Something dry and hip rather than wet and soppy.

It's looks like I'll be having lunch with that jiggly tub of martinis and bon bons soon.

Monday, May 03, 2004

Quivering protoplasm

Oh my, yesterday was awful. I had a spurt of normal energy in the morning, in the mid afternoon, and early evening, but other than that I spent the whole day lying on the couch or the floor and moaning. It was a strange affliction. This morning I am doing as little as possible, and lying down a lot. But my boy was shouting in the other room so I came in here for some noise reduction. Sitting up is OK. But I want to conserve my energy so that I don't collapse like yesterday.

It was like a flu, where your whole body aches, and yes I did run a temperature. We never measured it though, but I got pretty hot. I think it was an opportunistic virus, the kind you carry around inside you, normally to no harm. But the exercise two days ago (and it was light, moderate exercise), plus the sleep interruptions, seem to have weakened my system. I functioned until 9:30 AM, at which point I lay down on the concrete patio to rest. I did make a blog entry. Then there was more lying down and moaning. I took a couple of Exedrin around 1 PM while trying to nap. But then my rambunctious son basically mugged me. He was happy and bouncy and mischievous and playful, shouting in my ear, putting his feet in my face, slamming me. I kept begging him to stop. My moaning laughter turned into sobs and crying. I was just beyond my limit. It was like torture. It was torture. But when he saw me crying he showed once again one of the qualities about him that I really love. He is at root a caring, empathetic person. He hugged me and kissed me and tried to be gentle with me. He spent most of the evening gently applying pretend doctor remedies to me, using whatever toys were at hand to run scans on me. He found a tiny hole in the bones of my foot, and a tiny hole my forehead bone. He gave me some pretend medicines to heal up the holes. He also used a device which seemed to operate remarkably like the Mars rovers, to obtain a microscopic look inside me for germs. There were no germs.

By evening I was lying on the floor, slowly pushing myself along with my feet, grabbing bits of food off the table, pumping some water for myself. I didn't even feel like I could crawl. My wife was very solicitous and took good care of me. But when you are trying to feed dinner to two kids and get them both to bed, you can't always follow your moaning, back-sliding husband around the house asking him what he needs. Babies be screaming. She did everything yesterday. She made me a bag of mixed snacks (nuts and raisins and cereal and things) for me to eat in the middle of the night. She has just now made breakfast for us. I am going to go eat it...

...OK, I ate it. Two toaster waffles, two breakfast sausages, one fried egg, one banana, some chopped apple and kiwi. It is very reassuring to me that my appetite has returned, because last night I was unable to eat. And my stomach felt so touchy that I was afraid to put anything in it.

Just to remind the reading public, my hunch is that the horrible, total-body-wracking cough I had in October last year was the final insult which caused my ALS to bloom. Don't use logic on me, this is what I believe. So it is very important to me to try to come through any subsequent illnesses intact, as I have this superstition that if I get really sick, the ALS may be able to make more progress against me. Don't use logic, that's what I think.

I feel like I am handling this well. I just want to come out the other side with the same level of functionality as when I went in.

Sunday, May 02, 2004


You know that good way of feeling tired, that makes you just want to nap? I feel that way all over now. I had my affirmation jog yesterday (half a mile, to the gym), which produced no cramps. And I had the gym workout. And then the baby woke up a bit too much last night and go up too early. So combine the healthy gym recovery with the lack of sleep and I am going to go try to sneak a nap on the couch. Right now.

It's 73 degrees (F) outside, and 68 in the house, and I am shivering under a shirt, vest and windbreaker. Of course I'm wearing pants! And a hat. Brr. Maybe I am getting sick?

Saturday, May 01, 2004

Don't Have One

As usual I thought I had something to say and when blogging time came, I forgot it. Hmm. OK, well how's this for a substitute: At the ask-the-experts thing the experts gave the other night, they talked about research on rats, and also mentioned potential work with fetal stem cells. Here in the US the president put limits on stem cell research to placate his supporters on the religious right. Anyway, the pictures of the suffering rats were sad, and I realized that by virtue of having this disease, I am now directly effected by two raging emotional debates: animal testing and abortion. Calm down. Breathe deeply.

OK, first off, I think that animals being used for medical research should be treated humanely within the limits of possibility, given that the reserach is inherently cruel. I think animal research should be supervised and subject to a review and approval process. But beyond that, go ahead and experiment on those animals. It could save my life and the lives of many people in my situation.

As for abortion ... I think we're all against it and think it is emotionally painful. But it's not murder or anything close to it, and I fully support a woman's right to choose. If researchers need to use fetal stem cells to try to cure the disease I have and other diseases, then, if subject to appropriate controls and approval, by all means let them do it.

Let's not have an agreement festival here, though. Today I saw a bumper sticker that said "Against Abortion? Then don't have one." For some years I had been under the impression that this bumper sticker was intended to be a persuasive one, an irrefutable solution that takes the wind out of the sails of the supposed pro-lifers. But today I realized that it could only be an affirming message -- something meant to reassure those who already agree with it. You see, as a matter of affirmation, I agree with the bumper sticker. But as a matter of persuasive rhetoric, it fails, given the ready retort: "Against murder? Then don't commit one."
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